This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information. I just want everyone to know that this blog is ANECDOTAL and based on ONE FAMILY'S EXPERIENCE; it does not exist to present scientific facts (unless I specify otherwise).

Thursday, January 27, 2011

....I don't know exactly what came over me. I woke up on Sunday morning and decided that I was going to cut my hair. I've always dreamed of having long hair, despite the fact that I know it doesn't suit me. I let it grow, get tired of it, have it cut and then try again. But on this occasion, I woke up, and with Rachel lying on my left and Simon on my right, I just KNEW I needed to do this on this occasion, and I needed to do this myself.

So, after breakfast and taking the dog for a walk, I took my shower, put my hair in a ponytail and braid, took a pair of scissors and cut. The braid is about 9 inches long. My hair now is as long as my head but doesn't cover my neck. And, it worked!!!! I actually like it!!!! It's not the best haircut I've ever had, but it's not even close to the worst. And the braid has been put into a bag and will be donated to Locks of Love, putting a slightly philanthropic twist on this strange action I've chosen to take.

The strange thing is the reaction that I seemed to have gotten from my mother. She's APPALLED that I chose to do this. First, that I decided to cut it short. And second, that I did it to myself. She's publicly told me to go out and get a wig. I've spoken with her on the phone a couple of times and she just continues to go on about it. I was trying to tell her that her grandchild was throwing up half the night and she just kept screaming about the "self-mutilation" that I just did to myself.

Oh, well, I suppose I'm just nuts. But I knew that already, so who cares?

Monday, January 24, 2011

...between a positive developmental change and a regression? I mean, all kids go through "phases" that, as parents, we wish we didn't have to see, and these are considered "normal" and "important" learning experiences for our kids. And when our kids are neurotypical, we really don't think about it -- we just say, "It's a phase that he/she is going through and we just have to work through it." But when a child is "special needs", we question everything. What is related to the condition that goes with that label? And this is especially true when the unwanted behavior is not atypical with a diagnosis of, say, autism.

I'm talking here, specifically, about "Self Injurious Behaviors" (or SIB's as it is referred to in our communication notebook). Kevin and I started noticing a few things a couple of weeks ago in Rachel (yes, the twin I keep raving about how well she's doing) and decided we needed to bring it up to her teacher to see if they were seeing these behaviors in school. She's been hitting herself (but usually following us telling her that "I don't like that!" [while wearing a frown] when she's doing something that she knows we consider inappropriate from her [like throwing food]). She's taken to slapping herself on the leg, repeating "I don't like that!" (for the record, we NEVER hit her). It doesn't appear that she does it particularly hard or cause herself any pain. It's just a behavior that simply shouldn't be.

And, more troublesome, she's begun pulling out her hair. We first started noticing it when she's bored. She pulls out a strand or 2 and just plays with it, twisting it in her hands or stretching it as far as she can. When we asked her teacher about it, she commented that Rachel seemed to actually be stimming on her hair. And we've been noticing the last few days that it's no longer just a strand of hair, but several. We could have sworn last night she had 10-15 strands in her hand that she was playing with.

We don't quite know what this means. Is she regressing? Is she merely developing a bad habit (comparable to "twirling" her hair but just not quite getting it right)? I honestly just don't know. It's been such a long time since we've experienced a real setback for her, I'm not sure how to recognize one if it happened. Even with Simon, with all of my complaints about his seeming lack of progress, we never really saw a "regression" -- just a slow progression to the point of questioning if he was moving forward at all. Rachel we know DOES experience regressions when she is removed from her routine for extended times (during the summer for example), but that was more of a return to preexisting behaviors -- not the emergence of something new.

Thursday, January 20, 2011

Moms aren't allowed to be sick. We know this. When we take on the job, we accept that as a truth. And when that cardinal law is broken, things often fall apart.

In many ways, we're lucky in our house. I don't do much of the cooking (I fill in as needed, but in general if we're not having chili, I almost never make dinner). And my cleaning abilities are, well, abysmal. But I'm still not allowed to be sick. And I've taken that responsibility very seriously.

I think that, since taking on the "Mom" role, I have only been really sick once. That was when Daniel was about 6 months old and then I was REALLY sick (requiring 2 hospital stays and surgery). It led to me having to wean him much earlier than I would have liked and then taking that medication that I've alluded to a couple of times (which is still a daily thing). I've had my share of colds, but usually am fully recovered within a matter of days. I don't think I've had as much as a fever since that time. That's probably why this year has been such a problem for me.

Since the year began, I've been feeling lousy. It started with a cold/cough (the cough is still there and extremely annoying and persistent). I have no energy. I just want to sit or lie down and go to sleep. There isn't time for that. But I'm not REALLY "sick". I haven't got a fever. I'm not spending my time hunched over the toilet watching my last meal come back out of my mouth. I just feel "BLAH".

I can't believe I'm saying this, but I'm almost at the point of saying, "If I'm going to be sick, let's just do it, get it over with, and then I can get back to myself -- BRING IT ON!". This feeling that "being sick is coming" has gotten tiresome.

If I had the energy, perhaps I could have prevented this:

That pile of fluff had been growing behind that couch for days since I just didn't have the energy to do much more than say, "NO FLUFF!" to Rachel and Simon. Then, when Daniel and his friend was playing downstairs, they decided to pull the stack from behind the couch and decorate that side of the room. They made a "Christmas Tree" on the wall (they're on either side of it). I suppose that's what I get -- I left 2 4-year olds and 2 5-year olds alone in the room for 30 seconds to go to the bathroom. I should have known trouble would ensue. I suppose I should be happy that all of the fluff was contained around the couch. And, just to clarify, all of that fluff comes from a single cushion in the corner of the sectional and it's only been about 1/3 emptied.

I need to find my energy. I need to get over this cold/cough/whatever it is. This "blahness" is bringing me down.

Sunday, January 16, 2011

More and more is being learned about autism. There are so many different theories. Different people have different ideas as to what's the best thing to do about reducing risks and treating those already affected. Sometimes these are based on falsified data (i.e. coming from Andrew Wakefield's study). Other times, the studies are valid, but inconclusive. Even when there are some clear results to base theories on, people can't seem to agree. Sometimes these make sense. Other times they just seem to come out of left field (which is not to say that they are incorrect).

Recently, a new thought has been published and put into the general media. Now they are hypothesizing that children born when pregnancies are close together (second [or later] pregnancy starts before firstborn is 12 months old) can increase the risk of the second (or later) child being eventually diagnosed with autism. I still haven't read the source study -- just things that are published for the masses to ingest and interpret. Normally, when new theories are announced, I'm jumping on trying to locate the source report. I'm trying to use my experience and education to understand whether there is any validity to the conclusions that are drawn. This time, I just haven't been able to bring myself to do it.

Is it because I'm tired of the multiple stories and frustrated that, even though we are learning more, it just feels like we just don't know anything? I know I'm not the only one who feels that way. Through Facebook this morning, I read an article published on CafeMom by someone who is also frustrated by the constant barrages of potential theories of the cause(s) of autism and that writer announced that, as of right now, she just doesn't care until they KNOW (source = http://thestir.cafemom.com/big_kid/114839/i_dont_care_what_causes). Or is it because I'm closer to this profile (because of my choices) than any other story I've heard thus far? I made the decision to try to get pregnant when Daniel was a year old, and when he was about 13 months, we were successful. The study (from what I understand) only talks about those pregnancies separated by 12 months for the increased risk, but does that one extra month make that much of a difference?

I'm sure I've said this before here.....I'm willing to bet most parents who are faced with a child with any disability is going to wonder what they've done that may have caused this to be, even if it's just for a moment or two. I know for myself, I've replayed so many things that I've done and there are countless things that I'm not proud of when it comes to the way I've raised my children (Daniel as well as the twins). This includes things like taking a medication when I was pregnant with the twins that, and I was warned about this, no one really knew whether there was any potential harm to the fetus. I took it because it was believed by everyone, myself included, to be the best chance of having a healthy pregnancy and healthy babies. But I knew that it was a Category C medication and the teratogenic effects were unknown (at my request, my doctor has reported autism to the FDA in regard to this medication as a single incident report -- not known to be related to this medication). Did that cause autism in the twins?

Now there's this new potential risk factor that I chose to expose my children to. I'm afraid to find out if this is a real cause or just another hoax, or something in between. Like the writer of that article, in the end, I know it doesn't matter what caused autism to affect my children. What does matter is that they are autistic and that we need to do whatever is possible to help them get through these years until they are able to take care of themselves, in hopes that they will eventually be capable of doing just that. But every once in a while, those thoughts creep in there....

Wednesday, January 12, 2011

We had a crazy but fun day. Yes, the twins are now 4 years old. Schools had a 2-hour delay due to the snow, but we were still able to keep our existing plans. The only added issue this created was it made things a bit more insane this morning as I had to start heading out to birthday parties almost as soon as Simon's bus picked him up from school.

So, here's a post of pictures. I hope you enjoy this visual summary of the celebration.

Their birthday cakes -- Rachel is the cat and Simon is the turtle. One day I'll have to remember to write the story of how we determined their mascots.

Tuesday, January 11, 2011

Tomorrow is the day -- the twins' 4th birthday. It'll have been a year (to the day) that they started in their respective programs and they have both grown so much in that time. We've had some up and downs, some good moments and bad. I've been dealing with the frustrations of Rachel's rapid progress versus Simon's slower improvements. It actually took sitting down during his IEP meeting to realize how much he has accomplished since starting his current program. They are such different children than just a year ago. I can't remember if there was such a significant change in Daniel between 3 and 4. I don't think so. Because of their delays, I'd say that this is more like the difference between age 2 and 3. We think that (developmentally) Rachel is more like a just-turning 3 year old. Simon is more delayed (probably closer to developmentally typical 2.5 year old).

But tomorrow (assuming the snow doesn't cancel school), we'll be celebrating their birthdays not only at home (which will happen regardless of the weather) but having their birthday parties at school. Rachel will celebrate in the morning and Simon in the afternoon (so I can attend both). We've been spending much of the last few days getting ready. We did the gift shopping. We baked 3 cakes (1 for each school and 1 for home). Well, on that front, I've got to be fair. I made sure we had the ingredients and pulled the eggs and butter out of the refrigerator so it could come to room temperature, and went to the store for another pound of confectioners sugar (as we were a pound short) and Kevin does the rest. He's the chef around here. And also the cake decorator. He'll be decorating the cakes tonight.

Tonight I'm responsible for putting together the goody bags for the kids at the schools tomorrow and wrapping the presents. We hit a little snag on the presents (well, Simon's present). We decided to get them both Leap products (http://shop.leapfrog.com/leapfrog/) -- Rachel will get the TAG Learning System (no problems here) and Simon will get a Leapster 2 (problem). Daniel has one (he received it just before turning 4 as we were going on a long car trip) and Simon recently discovered it and LOVES it. So, we figured out that Simon would probably get a lot from such a device, as long as we were watchful and didn't allow him to stim on it (that's going to be the challenge). The problem is Daniel still uses his unit, and it IS his. So, we figured getting Simon his own unit would be a good thing, and Simon would get a really COOL present for a change (rather than using his brother's already used toys). Both packages arrived from the Leap Store yesterday.

Last night, we decided to set up the toys so they would be out of their packaging and allow them to jump right into playing with them. Sounds good, right? Well, the TAG system worked just fine. The Leapster had NO SOUND. That is, no sound without the headphones. Simon WILL NOT wear headphones (people who know him can attest to this). So, we found a fix online and tried it out. No go. So, I spent nearly an hour on the phone with customer service today and in 10-15 business days, we should receive a new unit. So, Simon's not getting his present on his birthday. I don't think he'll notice the difference -- we'll give him the game that came with the package and he'll continue to use Daniel's until the new unit arrives. But that's not the point. He always seems to get the short end of the stick because we can get away with giving him hand-me-downs. This time he is getting a present that he REALLY wants, and a brand new one (and "better" since it's Toy Story themed [Simon really likes those stories] whereas Daniel's is the standard green unit). The best laid plans....

But we're looking forward to the celebrations tomorrow. It's hard to believe they are nearly 4. But time moves on and they continue to grow and surprise us every day. I'll try to post pictures in the next few days of their birthday cakes/parties.

Thursday, January 6, 2011

Today is Thursday. We've been back to "Normal" routine for a few days now and it's been going all right. The insanity is back. The piles of things to do continue to grow as I've been feeling lousy all week and just not had the energy to do what needs to be done (To Do Lists will probably come into play on Monday). But at least I'm up to date on laundry. But I have done a couple of things that are note-worthy.

Earlier today, I received a phone call from the school's Transportation Office to inform me of a change in Simon's morning bus (new route number, new time, etc [but at least it's the same destination -- one can never tell with the MCPS Transportation Office]). While I was on the phone with them, I recognized the golden opportunity that had been handed to me and started discussing Rachel's morning bus ride (was informed this morning that they are adding another child to the route making the pick-up time even EARLIER). I CALMLY pointed out the length of her bus ride first thing in the morning and that there will now be 8 children on her route which may mean that it's time to split the route into two. I also mentioned that we went through this last year and did (eventually) work something out that seemed to work better for everyone -- I don't know if they just split the route at that point or just did a bit of re-directing, probably the latter. The person I was talking to didn't have the authority to tell me much, but she did put my comments into a note and was going to place it on the desk of the person responsible for transportation to Rachel's school. That person is out of the office today and tomorrow, but is due back on Monday. When she returns, this note will be waiting for her and it will hopefully receive her attention. If not, I now have her name and can call and follow-up directly with this individual.

What was the accomplishment here? I was calm. I didn't raise my voice. I made sure I didn't become obstinate. I just voiced my concerns. I listened to the explanations coming from the Transportation Office representative. I even "sympathized" with what they were working with. Hopefully, this will help me get a reasonable solution for my daughter.

My other accomplishment for today is possibly starting my journey down the road to become a parent advocate. A local organization is preparing for meeting for parents to explain the services and placements in public education for children diagnosed with ASD. One of the most important goals of this meeting (forum) is to empower parents with the information needed to ensure their children are assigned to the most appropriate placement/services (taken directly from the email). One of the areas that this forum will address is preschool placements. I have volunteered for the committee to advise the administrators of the areas where information is most widely sought. Will I be accepted to this committee? I don't know. But I have volunteered and hope they will allow me to participate.

Also, while Daniel was at soccer practice this evening (with Dad), the twins and I were here alone for dinner. We recently signed up with NetFlix and are enjoying streaming movies directly to our player. One of the movies we had in our queue was "Wiggle Dancing In The USA" (or something similar -- not quite sure of the title). I turned it on just before setting dinner on the table and watched Simon for his reaction. He was getting into the concert setting of this movie. He wasn't reacting badly to the lights or the noises from the crowd or the minor variations to the songs from the versions he's familiar with, all of which are good signs for us taking him to see the Laurie Berkner Band concert in DC in early March. But there's still several questions about whether it's a smart idea. I'm still "thinking about it", but definitely leaning in favor of going to the concert.

So, today has been a productive day, despite "not doing anything". I don't know what will come of either of these things, but at least I'm starting to accomplish something. And, for today, I'll take it.

Now I just have to figure out how to avoid the tantrums while picking up "'da boyz" that have plagued us this week. The problem isn't the tantrums themselves -- I can deal with that. The problem is the location of these tantrums -- in the middle of the street or in the parking lot. Is it just getting back into the swing of things or do we need to rethink how we do this?

Monday, January 3, 2011

I know....I haven't been blogging in a while.....just haven't really had the time. It's not that I have the time now, but I really need to sit down and get myself organized, and blogging helps me to do that.

2011 is here. We went to visit family over the holiday break and it went quite well. We got to meet my brother's girlfriend whom I have wanted to meet for some time (they live in the Detroit, MI area while we live in Maryland). We spent time with both sets of grandparents, all the aunts, uncles and cousins, and the kids really did seem to have a great time. I was just so tired that whole trip -- not sure if it was because of the lack of sleep (Rachel and/or Simon preferred my bed to their own) or the fact that I was fighting/succumbing to a cold. But we did it, and we returned home safely, back to start another calendar full of activities and insanity.

I refuse to make any "New Years Resolutions" -- they never come true and they add unnecessary pressure. But I am going to try to work on a few things this year.

1. Patience. I need more patience. I won't do anyone any good if I am fighting the unfightable.

2. I need to find more personal direction in my life. It's been nearly a year since the twins have started going to school for full days and I'm still "just getting by". I mentioned in a post a while ago that I have decided that I would like to be a parent advocate. Ever since then, I've done nothing to achieve that goal. Making that kind of pronouncement is great. It means I have somewhere to go. But I need to do more than that. So, in the next couple of months, I need to sit down and confirm I understand what that means. Not only that, but I need to figure what I need to do to get there. I realize that may mean that I will come to the conclusion that this career is not the right one for me, but I need to answer these basic questions to make that determination.

3. Organization. It always seems to come down to that. When I was working (outside the home), I used to work on a schedule. In some cases they were put on me by deadlines and other requirements. Other times, they were self-imposed. I had my schedules. I had my "To-Do Lists". And, during my most successful weeks, I would sit at my desk for 30 minutes Monday morning and write out my goals for the week. There were "Must Do" items. There were "Let's Do Our Best To Get These Done" items. There were even "If Life Shocks Us and There's Time" items. These lists were almost never fully checked off (I think that happened twice in nearly 3 years of doing this), but it allowed me to get organized and address what needed to be done. And the list wasn't a static one -- I would add items as they came up. I need to start doing this again. It does feel like I'm wasting 30 minutes early in the week, but if the end result is getting this stuff done, isn't that worth it?

So, this post serves as my first step in getting things under control. Life is good. The kids are doing well and learning. I need to keep letting that happen and start allowing myself to grow as well.

A Little Bit About Me and My Family

Every once in a while, something happens to a family that seems to change everything, whether that change is positive, negative, or in an uncertain direction. One such thing happened to us in March 2009, when we were informed our 26 month old twins (girl/boy) were BOTH on the autism spectrum. Their older brother (nearly 4 at the time) had always been ahead of the curve for most developmental milestones, so we had never really considered that some of the delays the twins were having had anything to do with autism. Well, we were wrong. Since then we have been learning about learning techniques and doing everything we can to make sure they get any and all help they need so that they can live normal lives. This blog chronicles that journey.

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Aspergers's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified)